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Tuesday, 4 October 2011

If I have a talent for anything, I
like to think that it’s rapping my way with words. But, to my mind, not
even the most gifted of scribes could find an easy way to tell people that they
have incurable cancer. Nor is there an easy way to know what to say in return. And
so what comes in response is, for the most part, a barrage of questions. How
did this happen? How was it allowed to happen? How did you suspect something
was wrong? How was it discovered? How are you feeling physically? How are you
dealing with it emotionally? How will this be managed? How long are you looking
at? Just, y’know… how?

Hence, in all the messages I’ve
been sent since the revelation of The Bullshit’s sinister return, very few have
avoided including some kind of ‘how’; some kind of puzzlement; some kind of
furious question; some kind of fist-shaking interrogation of the universe. And
rightly so. Because, really, what do
you say when your friend/colleague/family member tells you that? What is there to say other than ‘fuck’ and
‘sorry’ and ‘how did this happen?’ (Were I of a mind to be writing a different
kind of post today, I’d be recalling one example of particular note in which
none of those things were said and, in fact, no reference at all was made to the news I’d painfully revealed in my prior message – because, of course, my
incurable cancer is far less important than such trivialities as the name of
someone’s new dog. I can only hope and assume that my email was never
actually read, lest I realise what a terrible judgement of friendship I once
made.)

And yet, despite my so-called
talent for writing, I still haven’t found the words or the might or the answers
to appropriately respond to the many questions in the many kind messages that
remain unanswered in my email inbox (or voicemail or texts or Twitter stream or
Facebook page). So this post, then, is for the benefit of anyone who’s asked. And,
to be perfectly honest, it’s for my benefit too. Because, as I discovered the first time the word ‘cancer’ was said to me in that way, I often just don’t know the answer to how I’m feeling
until I’ve written it down.

But first, a story. As you may
have read in the Tupperware post several weeks ago, a series of panic
attacks that began around July time (coinciding with the heightened pain in my
back) eventually brought me to the conclusion that it was time to go back to therapy. And so, an appointment was made for the end of September: an
appointment which, I assumed, would set me back on the track marked ‘coping’
with its clever survival strategies and mantras of reasonable thought. But in
the meantime, of course, The Bullshit reappeared in the most spectacularly
terrifying way, proving me right about all the worry and panic and rather
altering my need for therapy in the first place. But hey, the appointment was
there, and I was damn well going to use it – no, we were damn well going to use it. And so P and I duly turned up, tissues
tucked into one palm, each other’s spare hand tucked into the other.

Given that, since the last time I
saw Mr Marbles, I’ve published a book in which I comment inappropriately cutely
on his corduroy slacks, I thought best to find a therapist this time who knew
nothing about The C-Word:
hence I – we – are now seeing Mrs
Marbles: a young, spunky alternative to Mr Marbles with patent pumps, kids’
drawings on the walls and man-sized tissues on the table; the Holly Willoughby
to his Phillip Schofield, if you will. We went through the usual introductory
pleasantries: my health history, our families, how long we’d been married, our
jobs…

‘And you, Lisa?’

‘I’m a writer.’

‘Great, good.’

‘Which, I should say, has largely
been my way of coping.’

‘That’s a good tactic.’

‘Well, we both like to have things
out in the open; it’s important that we face things head-on,’ I said, such
clichés doubtless leading her to believe that I am a writer of the truly
terrible sort.

‘You genuinely want to face this
thing down?’ she asked.

‘Exactly. We know it’s hard, but
it’s the only way we can deal with it.’

‘I think that’s brilliant. I mean,
some people can’t even say the
c-word, can they? Speaking of which, have you read that book? Because I really think…’

‘Oh,’ I said, turning to P and
blushing.

‘You have?’ she asked.

‘Erm, it’s my book.’

She looked down at her notes, up
at me, and down at her notes again. ‘Of course! You’re Lisa Lynch!’

‘Ha, yeah.’

‘Well it’s very nice to meet you…
to meet you both,’ she added, giving
P a look that said ‘crikey, so you’re
the incredible man I’ve read about’. I grabbed his hand a little tighter, my
daft way of hanging an imaginary ‘MINE’ sign around his neck. Mrs M was awfully
kind about my book, saying how many of her patients talk about it, and how they
say it’s helped them. I can never take that stuff on board, so I shuffled my
way past it as best I could, moving swiftly onto the Bigger Issues. It goes
some way to describing how uncomfortable I am with a compliment, I think, that
I’d rather discuss my concern about how P will cope once I’ve gone than talk
about the benefits of some daft thing I’ve written.

But hey, even I have to admit that having your own book recommended to you by
your new therapist is rather on the cool side. And, given the dearth of
situations in which we’ve been able to find laughter lately (alas, no funny nipple stories to be had where terminal cancer is concerned), it was a
welcome change from a mood that’s mostly been pure grey. But, anyway, back to
the hows.

‘I know I’m an idiot,’ said Busby:
my lovely mate who is categorically anything but, ‘But I haven’t been able to
work out why you were admitted to hospital straight after the diagnosis? I
mean, did the worst of the pain start only once you’d been told?’

I scrunched up my nose as she perched
on the edge of my bed, my cop-out signal of the stuff I hadn’t been telling her
over the previous few weeks.

‘Oh… so it’d been really painful
for a while?’ she said.

I nodded.

‘And you’d been keeping it quiet…?’

I nodded again.

This, I suspect, has been one of
the bigger unanswered questions, and with good reason. Because, annoyingly, it’s
just not as simple as last time. Last time there was a lump in my boob, a GP
appointment, a biopsy, all that stuff. This time, though? Well it’s all a big
bloody mess – made even messier by the back-break. (If, indeed, it wasn’t the
back-break that messed everything up in the first place.) You see, since
breaking my back some 16 months ago I have, of course, felt a certain amount of
pain. And yes, it got a lot better – but then some days it’s been, for
seemingly no reason whatsoever, a lot worse. So it’s been impossible to
distinguish between back-break pain and anything more sinister. Hence, the only
signals I had that something was seriously wrong were when a) it very suddenly
began to get worse this July, b) the Tupperware-bump hurt my skull way more
than it ought to have and c) I started to develop pain in my shoulders and
clavicles. And so, of course, I took it all to the GP (which is to say, I took
it to the GP several times, and also to A&E), who eventually referred it to
x-ray, who then sent it back with a stamp saying ‘cancer’.

In the meantime, my pain was
getting worse by the hour. So much worse, in fact, that by the afternoon of my
initial diagnosis, I found myself in Smiley Surgeon’s clinic (for he was the
only person who’d see me at such short notice) being loaded into an ambulance
and packed off to the Royal Marsden, from where I eventually broke the news.

Since then, the hows have been
equally – and frustratingly ­– difficult to answer; and yet they still come
thick and fast. Because in the seemingly innocuous ‘how are you feeling’, for
example, there are endless answers. First, the physical: I’m feeling sick,
constantly. I’m being sick, often. I feel the way I do when I’m sitting on a
bus and attempt to do anything (looking at my phone, listening to music,
reading a book, having a conversation) only to end up with motion sickness; I
feel like that all the time. Even
writing makes me feel sick; a fact which makes me feel even sicker. I’m
light-headed. I’m constipated. I’m tired. So tired. I can’t walk very far. I
can’t talk very much. I can’t get a grip on what day it is. I’m often in pain.
And yes, the pain is under control thanks to all the morphine – but that,
coupled with the chemo, is probably what’s contributing to all the sickness in
the first place.

And so to the emotional: I’m
angry. I’m very, very angry. I’m angry at being a patient – I HATE being a patient – and I’m angry
that I can’t do much for myself. I’m angry that I can’t be left on my own and
I’m angry that we’re all back here again… and that being ‘back here’ is so much
worse. I appreciate that it’s going to take several weeks before we can ascertain
what my quality of life will look like, but all this waiting and hanging on and
putting up with things in the meantime leaves me with little hope – sometimes
no hope at all. I simply cannot abide what this is doing to the people I love,
and I further cannot abide my reaction to it. I should be easier on them, providing
a shoulder of strength for their palpable heartbreak – not getting frustrated
and feeling hard done by and getting even angrier. Because what are they
supposed to do? They are, after all, already grieving me – even though I’m
still here. They’re hopelessly upset at their inability to do anything to help.
And yet all I want from them is a triviality; a joke; a snippet of normal
conversation that will rescue me from the feeling that I’ve lost my life
already. Because right now, that’s how it feels. This mystical ‘quality of
life’ for which everyone is striving – where the hell is it now?

But also, I’m angry that I can’t
answer all of the questions. I’m angry that there are so many questions in the
first place, yes, but I’m even angrier that I can’t find a better way of
answering them than this. I wish it were as easy as being able to give people a
diagnosis less woolly than ‘it’s in my bones – all of them’, and packing them
off with a fact sheet, as I did in my initial post. But actually, that
stuff sort of doesn’t matter any more. Because we’re not coming to terms with
cancer; we’re coming to terms with death. And yes, that death may be a long,
long way off yet – and despite all of the above, I hope with every inch of my
being that it is… heck, we might all find ourselves fifteen years down the line
with you guys tapping your watches at me – but in the meantime, all that
appears to remain is a bloody great question to which, quite simply, I have no
answer.

27 comments:

Ahhhh Lisa... I've just read this blog and I'm trying hard to refrain from just posting the following very important words (which must of course be read in a whiney 2 year old sort of a questioning voice)... .oh bugga it, I'm going to ask it anyway:

Why?

Whyyyyyyyyyyyyy?

Whyyyyyyyyyyyyyyyyyyyyyy?

But like most 2 year olds, they've already moved on to the next thing/thought/distraction to really need a reply... and just sometimes there isn't an answer anyway!

oh lisa, i am so heartfelt sorry for you, just terrible news, i missed your previous posts so apologies for my delayed comments, my fingers are very firmly crossed that you get a wonderful fifteen years at the very least, you deserve them x

I probably shouldn't have read that when I'm on lunch at a client's offices should I?

Fuck.

Changing the mood though, did I ever tell you about my friend from Uni, who I used to live next door to in halls and borrow all her Eddie Izzard videos? The one who I have a vivid memory of her once sheepishly asking me if she could get involved with writing for the student magazine some time, because she quite fancied that whole writing lark?

Well here's the funny thing. Turns out she can outwrite God. How about that?

I could tell you how awful this all is, how horrible and just fucked up. But I don't have to tell you, because you (of all people) already know. You know and still you manage to write these incredible posts. You still comment on Tv-shows and thus make us smile. I know you're not the best at taking compliments but damn I have to tell you: I admire you Lisa Lynch. xx

Egads, there's so much to say that I don't know what to say at all. So this will have to do: you're amazing. You inspire me. And I'm scrolling way ahead in my iCalendar to set a reminder for 15 years from now, so I can tap tap tap my watch while reading your latest "How I Escaped Cancer Yet Again" post.

Just from joshing with you on twitter I can guess what a spiritual and 'om' type girl you are. With that in mind I went to a cathedral this morning, lit a candle for you and told "God" what an utter bucket of bastard he is.

Not that I believe in any of that stuff... but I hoped you would smile at the thought... and goodness knows how much many of us want to make you smile, just for a nano second.

From another kindred spirit, you are nothing short of amazing. I utilized the F verb until I burned it out which is why I believe I then turned to the "double eleven" middle finger salute just to get my anger out.

I've lived 20 years of such and continue to and it's a journey I'd not wish on another. You have my utmost respect for having the gumption of honesty and fortitude of your spirit. You make me smile with tears as I'd gladly jump across the pond to give you a hug and share a good belly laugh.

You are nothing short of amazing.

You are so loved and you are HERE.

Dullards and naysayers and anyone else who gets in your way, tell them it's not just your shoes they can kiss.

I see you and you are here. I've been grieved for so long it's a bore and makes me furious. But again, I see you now....you beautiful spirit of love.

Hope will return, slowly, but gradually the grey starts to lift and allow a few colours in. When I found out it had spread to my liver in July, it took weeks to start to deal with it. I have thrown myself into normality, treatment options - cos there are loads - and support of friends and fellow Bullshit Buddies. We carry on fighting, we've done it once we know the score... Good luck, and give me a call anytime you fancy a coffee and chat - I'm only down the road from you!!

Not a lot I can think to say really so I'll move on and cheer you up with my very best motion sickness story...Bonfire night fair 1994ish I made it quite clear that I should definately NOT go on the Waltzers- round and round makes me sick! A bit of peer pressure later and I find myslef hurling all over those peers- G force sticking my face right in their's! To this day I can't even write a single text whilst in the car without feeling ill! Thanks for keeping us all updated- I too had wondered if a sudden pain had followed the diagnosis! Lots of love Erin Xx

I finished reading the C word today having not been able to put it down since I started, so brilliantly is it written. My first action afterward was to look at your blog for the first time. I had no intention of commenting but having read today's post, I feel compelled to. I don't know you but am gutted for you and for P. Keep fighting, keep blogging and keep understanding that you have truly touched people, made them laugh, given them clarity about the bullshit that is ordinarily lacking and done so with great humour. Know that you are inspirational and accept all the compliments thar come your way, they are so deserved. With love.

I started off with stage 3c breast cancer and had all the usual treatments. When it seemed to come back again in the lymph nodes in my neck I was scheduled for another operation and more chemo. I despaired, panicked, pulled myself together and decided to go alternative (backed up by lots of science which I had spent the previous year researching). I went to Doctor Nicholas Gonzalez in New York. Nine years later I'm still around and cancer free. Alternatively I've heard wondrous things about Dr.Burzynski in Houston Texas. Probably I would try Burzynski first and then add Dr. Gonzalez nutritional and enzyme protocol to it. Burzynski's works fast apparently, he uses antineoplastins. They really do work.

Lisa Lynch,May I make the understatement of the year and say ' that sux '. BTW I learned about your news from the BCC forum - I hope you will take it as a HUGE compliment that ladies (and gents) you have never met, country wide, feel a connection to you.Very best wishes to you.

Lisa, we don't have the answers. But you do bring such a lot of hope into people's life through your bravery and endurance. You do prevail in these awful times and you give hope and guidance to people who are not accepting their fate so gracefully.

Not for one minute am I saying that this fight is up. You are going to go on for a while yet, as we all hope to. It's your honesty coupled with your ability to tell us all who you are that compels us to listen. And to be affected.

Lisa, I don't believe in god. It would help if I did. I remember you saying that you didn't either and that all can be explained by science.

I have only (personally) known two people who died young. Both were exceptional and this is not sentimentality speaking. In some weird way it makes me believe in something. Only the good die young blah, blah. To me this is silly. But it's, inexplicably, true.

Lisa, you are probably not going to make old bones but you have had an impact on this world. Sometimes I think there is another one. Maybe you have just been called home early.

I do hope this isn't too daft. You have a lot of people who love you dearly and you will have to hang around for a long while yet on this plane.

Lisa, may I apologise for my really weird message yesterday. I live on the other side of the world so 'twas evening (late) and much vino had been consumed. When I woke up this morning with the vaguest memory of what I wrote I nearly bit my tongue off. Actually, just bit the pillow and felt horribly embarrassed.

You are a complete inspiration. I am soon to be 32 years old and like yourself I thought that by this age I'd also be a "sorted woman", albeit for completely different reasons. Thank you for the reality check.

I have tried countless times to leave a comment on your blog, but words have always seemed to fail me, which doesn't happen that often.

There is history of Breast Cancer in my family(gran, great aunt and this year my Aunt has been battled with the Big C). Your words, your anecdotes, your sense of strength and spirit that jumps off the computer screen, has been invaluable.

I am also a Registered Nurse and I think your blog has given such HUGE insight into the emotions of being the person who receives that devastating diagnosis. For that I thank you.

Your book - the honesty with what you wrote, was nothing short of humbling.

Eh up

Welcome to the website of me, Lisa Lynch: author, editor, blogger, wife, Ram, telly-addict, doofus, cancer bitch (but not, I hasten to add, cancer's bitch). The latter of those things is what initially got me blogging, swearing my way through The Bullshit following a pesky breast-cancer diagnosis at 28. Some three years down the line – with newly grown hair, a newly published book and a newly perky rack – I dared to assume that I'd seen the worst… only for the c-word to crop up once more: this time in my bones and brain, and this time incurable.

And so, from being a blog intended to chart my evolution from 'the girl who has cancer' to merely 'the girl', it seems we're back to the former. (If, indeed, it's still acceptable to even call yourself a girl in your thirties. Which, let's be honest, it probably isn't.) But before you write this off as Just Another Moany Health Blog, stick with me. Because cancer or no cancer, curable or incurable… I'll still tell it the way I see it. The universe might be in control of what’s going on in my body, but I'm in control of what’s going on in my blog. Which is why I hope you'll continue to join me as I write my way through my experiences. You see, this isn't a story about some poor, unlucky lass being taken down by cancer; it's simply a story about the extraordinary life of an ordinary girl woman.

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